Insight into the Patient Experience

Earlier this week, the Research and Training Institute at the Cancer Support Community hosted Insight into the Patient Experience, a special program commemorating the release of its second Registry Report based on the findings of the Cancer Experience Registry. The Cancer Support Community established the Cancer Experience Registry in March of 2013 as a robust and enduring vehicle designed to engage people living with cancer from across the country, identify trends and track their social and emotional needs over time, and raise awareness of these findings. To date, over 12,000 patients and caregivers have joined the Cancer Experience Registry.

Since its establishment, Cancer Experience Registry has given a voice to cancer patients and their caregivers. The Cancer Experience Registry currently includes 10 specialty registries: Breast Cancer, Caregivers, Chronic Lymphocytic Leukemia, Chronic Myeloid Leukemia, Lung Cancer, Melanoma, Metastatic Breast Cancer, Multiple Myeloma, Prostate Cancer, Stomach (Gastric and Gastro-esophageal) Cancer, and is looking to expand in to other cancers in future years. However, the Registry is open to any cancer type and to anyone affected by cancer.

Inspired by the findings of the Cancer Experience Registry, the Cancer Support Community developed Frankly Speaking About Cancer, a free educational source—available online and in print—for people living with and affected by cancer. The Cancer Policy Institute at the Cancer Support Community has also used the feedback and insights of these registrants to form its policy efforts in order to ensure that both treatment and policy take on a patient-centered approach.

Patient Perspective

In line with the purpose of the Registry report, the Cancer Support Community welcomed LaKeesha Murray to give insight into the patient perspective. LaKeesha, a triple negative breast cancer survivor, spoke about how her diagnoses with cancer affected her as well as her family. LaKeesha remarked on the importance how she talked to her children about her diagnoses and how they were involved in the caregiving experience. Moreover, she addressed the importance of sharing her experience with friends and family and encouraging members of her family to get genetic testing for inherited genetic mutations done due to her family’s history with breast cancer.

Cancer’s Emotional Burden

One of the main focuses of the Registry report is the emotional burdens that cancer patients face. After her second cancer diagnosis, Lakeesha said she felt that, “Once again my life was out of my control, and I had to make a lot of life changes that are hard on cancer patients.” She relayed that cancer patients can often feel overwhelmed by the possible implications of the decisions that they have to make regarding treatment options. The Insight into the Patient Experience found that nearly half (47 percent) of patients are identified as at risk for clinically significant levels of depression. Furthermore, the report found that 93 percent of cancer patients highly value quality of life when weighing treatment options. In response to these findings, Cancer Support Community President, Linda House, argued in regard to clinical trial data collection, “We’re not collecting information that would tell us how patients are living with the treatments they are receiving.” The Cancer Experience Registry allows us to gain a better understanding of how different cancer treatments can affect patients both physically and mentally in the long run.

Cancer’s Social Burden

The report also focuses on the social burdens on cancer patients. Dr. Yousuff Zafar, a medical oncologist, shared his experience with one of his patients when, even though he had positive news, she showed physical signs of anxiety as a result of her interpretation of his body language. He remarked, “I had no idea how much every gesture, and every expression, and every word that comes out of me has an impact on my patients.” He focused on how medical professionals can improve communication with cancer patients in order to improve the overall patient experience.

Cancer’s Financial Burden

Another focus of the study is the financial burdens that cancer patients endure. The registry report found that 73 percent of patients reported not discussing the cost of care with their care team. It also found that 30 percent of the patients surveyed said that they depleted their savings due to treatment costs. Moreover, when discussing clinical trials, 43 percent of patients noted lack of transportation as an obstacle stopping them from participating in a clinical trial. Hematologist Dr. Craig Cole commented, as a medical professional, “I cannot allow my patients to walk out with the stressor of ‘how do I pay for this?’” Furthermore, the report also stated that when the emotional distress and financial burdens of patients are high, patients are less likely to adhere to treatment.

The Cancer Support Community is dedicated to ensuring that all people impacted by cancer are empowered by knowledge, strengthened by action and sustained by community. Senior Vice President at the Research and Training Institute, Dr. Joanne Buzaglo expressed, “We can only empower people by knowledge if we are listening to what they are saying; if we are learning at each step of the way.” Additionally, Dr. Cole commented, “One of the most critical things that we do is to make sure that patients feel empowered.”